Breathe

Here's a valuable lesson I learned last Thursday: Above all else, look in your communication notebook before you swan dive off the deep end.

I picked Alex up from school and I could tell he had a rough day.  He was barley hanging on.  His little head hung low, shoulders slumped, eyes steadfast in front of him, only seeing the little bit of real estate in front of him.  He was following out behind his para, like he was leashed.  Little feet shuffling, trying to upturn bits of snow on the sidewalk.  Doing everything, heck anything, just to make it to the safety of the of the car.  He didn't make it. 

Angie, his para starts to relate how bad his day was: His backpack fell open in the morning, his banana--smushed.  He had a stick at recess and he was told to put it down.  A friend came to close and he stuck his hand in her face.  He got in trouble, he took his breaks, he got in trouble still.  Snack was ruined--the banana was beyond repair. 

As I'm trying to collect him and politely tell his para to shut up, he lost it.  Lost it in a way I'd not seen since we went to the east coast for the holidays and threw his routine and world into a tailspin.  He started crying, kicking up snow, twirling in circles, head butting me and saying, "bwooop."

Doing things I've not seen in years.  Doing things to calm his little mind, to regain some semblance of  control.  He was unraveling before my very eyes.

Other parents staring, kids looking.  All walking a wide circle around us.  Me not caring.  Only seeing the pain in my little boy, trying to find a way to help him. Calm him. Get him out of here, get him home. 

He's still not right.  He's irritable, volatile, restless, just a mess.  I'm furious.  What in the hell could have happened at school to cause this?  I've racked my brain and gone over what his para said.  Something happened.  I'm clueless as to what it was.  And I'm mad. 

As a last ditch resort, I call his doctor and make an appointment and we head in.  He has a positive strep test.  My little boy is sick. 
After a round of antibiotics and after Alex and his sisters are tucked in for the night, I delve into his backpack and go right to his communication notebook.  Folded up neatly inside there is a Medical Exposure Form--Strep.  He'd been exposed to Strep. 

And just like that, I'm out of the deep end, coming up for air, breathing for the first time in hours. 

My underestimated amaryllis.

I've been watching the transformation of an Amaryllis.  It's beauty amazes me. 

In our house we stir by hand.

It's amazing what pops into my head and when.  My daughter and I were baking a cake today and it dawned on me.  I never use a blender.  Ever.  It seems so, dare I say it, normal not to use one. 

The first time I used a blender to make a cake with Alex, I darn near peeled him off the ceiling.  It was instantaneous.  He screamed, wriggled and tried to claw his way out of my arms like a feral cat.  Torn between trying to get away from the offending noise and stay in the security of my arms.   Cake batter went flying everywhere because, stupid me---I couldn't make the connection.  So like an idiot, I got things cleaned up and turned it on again.  Let's just say two was the magic number.

I cut myself some slack on this one since he was only about 12 months old at the time.  Hindsight's twenty-twenty, right?

Over the course of Alex's life I've found out the hard way some of his hearing sensitivities.  Basically, it's anything with a high pitched wine, excluding his sisters.  Here are some of the most offending noise makers in our house:

Beaters                                         Blender
Coffee grinder                                 Knife sharpener
Pencil sharpener, automatic            Electric toothbrush
Hair dryer                                       Lawnmower
Weed whacker                               Sirens

Well, needless to say, seven years later and I still stir the cake batter by hand.  I'm OK with that.



In our house, Tink lives in a castle.



Red Robe strikes again...

So we're getting ready for school and true to form, Red Robe is sucking down a pint of coffee, simultaneously watching You-Tube and our morning unfold.  For a brief second I see Alex and I know, just know, something horrible is going to come flying out of his mouth. "It's not fair!" he shrieks.  "She's not wearing clothes and we have to get dressed every morning,"  he says pointing an accusing finger in the Robe's direction.

Well, I'd be lying if I told you this took me by surprise.  I'd been expecting this day would come for a long time now.  Alex holds pretty tight and fast to our house rules and the fact that she's been breaking this one for quite some time has gotten under his, and my, skin.  

So I look at Alex, then pan over to Red Robe and say, "Well, I don't know guys, what do you thing we should do when one of our rules are broken?"  Alex responds lightning fast, "Put her in the corner."   Now Red Robe is watching all this go down with the sudden realization she's been caught.  I can clearly read "Oh Shit" on her forehead. 

I ask, "Well Grandma, what's it going to be?  The corner or the clothes?"  I felt like I was in an old-school western, holstering my laughter while trying to be a mom to my own mother.  Silence.  She turns and marches upstairs to get some clothes on.  It took everything I had not to explode in peels of laughter. 

Now, let me take a minute to let you know, I love my mom and I totally get she's in a transition stage.  She's recently retired and has moved in with us.  I get it.  I'd bet a good twenty bucks she's in a full blown depression.  But what I will not tolerate is the total unwillingness to do anything other than sit, watch and commentate.  If I wanted someone to critique and teleplay my every move I'd be living with my mother-in-law. 

I'm fighting back a bit to push her and get her out and about.  And it's like I have a teenager in the house. 

So, as I heard the stomp, stomp, stomp of angry feet as she went marching, I got an obligatory 'humph' and I know, just know, it translated to "its not fair!"


On a totally unrelated note, if my husband asks, I have no idea how the dishwasher door broke...


Gracie helping out.



Safe in my heart

I mention this out loud only once a year.  This is the day my son Wyatt died.  The day my world stood still.  The day my world stood still.  When everything I knew and cared about seemed worthless.  Knowing, right then, part of me died.  Two years ago, today.

There are some things I remember with such clarity it stings.  Holding him.  The nurse coming to take him away.  Running into the wall face first and laughing hysterically.  Sitting on the front porch and knowing it was minus twenty and not feeling the cold.  The faces of friends, their shock, the anguish.  And remembering not a single word they spoke.  The drive to the funeral home.  The total emptiness.  The gift of Alex simply accepting it as a fact.  My daughter looking at me, asking where he went.  And not having an answer.

There are gaps too.  Enough pain killers can do that.  Afternoons slept away, staring out windows.  Waking up, seeing the sun, and rolling over.  Not answering a single doorbell yet looking at flowers all over the house.  The food I never ate.  I was too doped up to care.  I couldn't make sense of it.

It seemed to go in slow motion yet it went way too fast. 

And now I'm here, two years out.  The pain is still there.  I've come to accept it will always be.  I used to see him everywhere and some ways I still do.  In the nameless little boy at the grocery, the jingle of a wind chime, in the wisp of a wind, a gull at the beach.  All have the potential to send me reeling back.

But I'm here.  Now.  There are days when I catch myself being happy, truly happy, without the pang of guilt.  And I'm starting to be OK with that.

I have no pictures for this post.  I have tried but I simply can not.  Can not will myself to go to that file in my computer and look.  I'm not there yet. 

So after today, I will say no more.  Back he will go, tucked safely into my heart, where he belongs.

Update time

Well, we managed to get our heater fixed.  Only after we moved out for a night, dealt with the rudest man around and then readjusted Alex to being back home.  It's amazing how one little thing can upset the apple cart.  Lizzy was so happy we were going to be spending the night away she almost puked.  Alex almost puked because of the uncertainty of the situation.  It took almost three days for him to get comfortable in the house and now he's slightly obsessed with our HVAC units.

And the heater broke again, and we fixed it.  Again.

My little Alex made it through the school car line this morning, all by himself!  I can write a whole post on that but for now lets just say I'm beaming!  I expect in three days or so he'll be reeling from the added stress but right now he's so proud of himself.  I am too and I'm hanging on to that. 

My sister's back from Boston.  She had a brain tumor removed ten days ago and to say we were worried is like asking if the Pope's a little bit Catholic or if Paula Dean uses butter.  She's exhausted and worn-out but lab results indicate a successful operation.  I'm holding on to that. 

Construction in the house is ongoing and I'm getting used to strange men using my toilet and making themselves at home, in my home. 

Red Robe is still annoying and chatting to my back as I write.


We've had two snow days last week and as I type snow is falling again.  We're going to have another one tomorrow, I can just feel it.  I wrote this post two days ago and got busy...we did have the snow day and we're expecting another one this Monday. 

As a kid, I used to love the anticipation of snow.  Waking up, running downstairs and plunking down in front of the TV.  Dying, just dying, to see if our school made the cut.  With Alex, it's the complete opposite.  He worries about the time he's missing, how his teacher's going to readjust schedules, how to make up lost time in centers.  He truly gets upset.  So right now I'm thinking of ways to prep him for tomorrow's day off.  I have to have our day mapped out and our schedule completed, down to the 20 minutes we're going to go outside and build a snowman, the 10 it will take to chuck outside gear in a pile and the 15 it's going to take to drink hot chocolate.

View out our back windows.

Of all places, I found myself this morning in WalMart's clearance aisle.  I found a snow globe of an angel with the saying: If kisses were a snowflake, I'd blow you a blizzard.  I bought it.

Stop, I said STOP!

So I had this random thought pop into my consciousness, like a thought bubble in mid sentence, its worked its way to the surface.  All while I was trying to get Aspie to stop playing his I-Touch. 

Lets back thing up to when we were at our old house and Alex was about four.  He was out riding his big-wheel and I was sitting outside with him, just watching him go up and down the driveway.  He never ventured too far out of range.  Just up and down the drive.  We used to live on a dead end street, our street joining up with the main road, one house up.  For whatever reason, that day he decided to see what was up there.  I watched him first out of curiosity, then in fear. 

He wasn't going to stop at the intersection.  I knew it.  I could feel it.  I started running after him, screaming his name, telling him to stop.  Please stop. 

He didn't.  He was oblivious. Having the time of his life. 

I often joke that Alex is in his own little 'bubble' and when he deems it necessary, he lets us join in his world.  I don't know how I managed to do it, but I got up next to him, grabbed the big-wheel and started yelling at him.  And I'll tell you right now I'm not proud of what came out of my mouth or this particular moment but for old times sake here it is: "I said STOP, why didn't you stop?  You scared the life out of me!  Why didn't you stop??"  I was crying at this point. 

He looked at me, cocked his head off to the side a little and said, "Mom, you did not tell me what to stop."  Curiosity was written all over his face.  I didn't tell him what to stop, seriously?  Seriously??  I was so mad I think for a few seconds I think I saw stars. 

I grabbed his arm and yelled, "If I tell you to stop, Gawd Dammit YOU STOP."  I went on like this for a few more minutes but mid-way through my rant a few things clicked in my brain.  Alex was looking at me while I was yelling but he wasn't seeing me.  He didn't see my anger, fear, frustration.  He didn't hear my anxiety, the pitch of my voice, the fear in it.  None of it.  I was a blank slate to him.

It hit me like a ton of bricks---he can't read my face or hear my voice.  He can't process me.  He can't read me.  That night I think I drank heavily.



So it's not the big-wheel but you get the idea, right? 


I could go on and on about all the time's I've felt like a horrible mother (and yes this was one of those times) and how I've struggled.  But I won't.  I could fill this whole page and then some and it'll get us nowhere. 

Let's just say I've learned a lot since then.  I'm still learning.  But I do know yelling's out. Totally worthless as a matter of fact.  And now when I want something from him I'm horribly, horribly specific.  I now say: Alex, please turn off your I-Touch or I will take it away in one minute. 

How's that???

I hate to tell you this, but...

That's how things started the other day as I dropped my daughter off at preschool.  One of the other mom's hunted me down in the parking lot.  She actually waited for me in her car, flagged me down and told me this little diddy about my son.  She starts off with: "I hate to tell you this but..." 

Here's some background first--our kids are in the same grades.  She has two little girls, one if first grade with Alex and the other in preschool with Liz.  As it turns out, she's a super nice mom and I have only good things to say about her.  I know, I know, you can pick your jaws up now.  Anyway, after she tracks me down, she tells me that her daughter found my son wandering around the playground alone (not at all unusual for him, actually its fairly common and I would crap my pants if he were doing anything else) but he was crying.  Alone and crying.  She told me her daughter asked what was wrong and Alex said "no one wants to play with me."  Her daughter then offered to play with him and they played a spy game according to Alex's rules. 

So there we were, standing in the preschool parking lot and I learn how good her kiddo is and how she totally helped out my son.  Like I said--she's a good mom and I can say nothing bad about her.  And yes, I really do want to adopt her daughter.  Anyway, she was telling me this, not to go on about how kind her daughter was, but out of genuine concern for my son.  I wasn't sure how to feel.  I did think it was funny that they played a game according to 'his rules' at first but then came to the quick conclusion that that's probably half the problem.  I was disgusted that my kid was alone and crying his eyes out in plain sight of his para and teacher, I later find out, and thankful beyond words that there others out there looking after my kiddo. 

Needless to say I got home and fired off an e-mail to his resource teacher.  It was filled with a little bit of disgust, a fair amount of concern and loaded with my understanding that it would never happen again.  I started it with "I hate to tell you this but..."

Mom, it's cold in here!

As the kids go running downstairs yesterday morning that's what I heard.  Except it was more like "Moooom, it's cold!!!  I'm freezing!  Did we pay our bill?"  And they went running back upstaris.  Turns out it was cold, 51 degrees to be exact.  A day later and it's still cold in here.  The heater in our house went out yesterday morning.

Apparently the draft motor is out and they don't have one in stock.  It's 'on order' and should be here by noon today.  I'll wager 20 bucks it's not here.  I called this morning to see what the status was and the guy got all pissy and told me it was a "coincidence we don't have any in stock...must 'a used 'em all up with this cold snap we're a havin."  Like I should be impressed or something.  I'm not impressed.  Matter of fact, I'm more than a little pissed off.  The heater is a Lennox, it's not some wacked out off-brand and the fact they don't have any motors, or what ever the hell it is, has me steaming.  Add to it the guy's crappy attitude and I'm pissed.  It's not like he's freezing his ass off in his home. 

We've been below zero for the past two nights so I've taken the kids to stay at my sister's house.  Now, it seems like a pretty nice solution and it is, don't get me wrong.  I had to get all their stuff together--jammies, toothbrushes, clothes for the next day, diapers, wipes, food, Pack-N-Play, you get the idea.  The whole time I'm doing this, freezing my ass off, Red Robe is playing JewelQuest on the computer.  No lie.  With a winter coat on, sitting on the bar stool playing JewelQuest.

I was woken up so many times last night I lost count.
Mom, I have to pee.       Me: Go pee.
Mom, I can't see.
Mom, Alex has my covers.     Me: Alex, give your sister her covers.
Mom, Lizzy has my covers.    Me: Lizzy, give your brother his covers.
Mom it's 4:30, are you awake?
Mom the clock says 4:33, are you awake?
Mom, can I sunggle?
Mom, my bed is wet...

I managed to get them out the door and into school but I know Aspie is going to have a hard time today.  He told me several times that a sleepover was "not part of the plan" and he's been tugging on his shirt sleeves and pulling at his collar.  He can't sit still.  Instead of a normal eye blink, he's been hard blinking.  I know this change has him wound up and I'm anxious for him.  I've e-mailed his teachers at school but I know they don't know or get how upset these changes make him.  And for that I'm worried for him. 



Today, this is where I really want to be.



And she's back...

And just like that, the door's been slammed shut.  The Red Robe is back.  I'm sure she was sent back like a Christmas package, red bow and all, with my brother singing "It's the most wonderful time of the year" as he waved bye-bye and see ya later at Logan's drop-off zone.

The bar stool has been commandeered and I'm once again being watched, followed, and generally irritated.  We have a snow day with the kids today and while we were outside sledding, I actually looked up at the house and she was staring out at us.  Didn't want to join us, but was content watching from the sidelines. 

No, she's not peering out of those windows...she's right above in the kitchen.  I didn't realize what was going on till after I took the picture.  After we came in, she again, just stood and watched us take off all the coats, snow pants, etc.  Alex looks at her and goes: "What? What??"

Part of me wants to tell Aspie to knock it off and another part of me thinks it's hilarious that he can see so clearly what's going on.  I don't want to take advantage of some of Alex's Aspie traits, like repeating what he hears and being brutally honest, to solve my problems but the thought is secretly very appealing. 

Now I'm now walking around my house with all sorts of pent up rage and anger.  Quite the opposite.  I've taken more of a "in your face" kind of approach and when she's staring at me, tries to do what I'm doing or asks a ridiculous question like: "Where do we keep the chicken?"  I ask what she's doing and why.  I am usually met with a huff and silence.   Like right now, for example, she is literally standing behind me watching me type.  I've asked what is going on and the answer is nothing.  Like, dead air.  She didn't say anything.  So here I type with, wait for it, there's the huff.  Now silence.  She's walking away.  And she's back again.

I think I'm going to get the kids and go outside again.  I like it better being on the outside of the cage.  At least that way I can't hear the huff.   

The flapper

Back when my Aspie was about three I noticed something was different when he got excited.  He flapped.  And flapped.  And flapped some more.  It was like he was in one of those old Lewis and Clark movies where they put wings on their arms and launched themselves off buildings and tried to maintain air.  He'd get his little arms going and off he'd go.  I never noticed it until my sister said something about it.  Then I noticed it all the time.  He'd flap when he was excited, when he ran, when the doorbell rang.  It was the one thing that helped me pinpoint what was going on with him.  To this day he still flaps.  It's not as noticeable but it's still there. 

At the time I was really worried and didn't have a clue as to how to stop it or how to get him to shake out of it.  Turns out, he was flapping as a way to regulate all the external stuff coming at him.  All the excitement, excess stimuli, anything different.  It was too much for him to take in so he'd flap as a way to gate-keep what was hitting his front door.

I found out that a lot of Aspie's flap for self-regulation purposes related to sensory issues-either as a way to calm themselves or to regulate (perhaps block) all that extra external stuff coming at them.  Basically it's a coping mechanism.  Our little Aspie would also flap if he was upset or if he couldn't do something as a way to "get his angry out' as he would call it.

There are ways to decrease the flapping such as interrupting it as it happens or allowing flapping time at certain points during the day.  We tried to interrupt him a few times but it made him flap more and stressed him out.  He truly didn't understand what we were doing.  He wasn't hurting himself or anyone else so we left well enough alone.  The flapping really seemed to be something he needed to do.  It calmed him and allowed him to focus on what was going on rather than getting more hyped up.  I was uncomfortable taking away something that was working for him so we left things be. 

As he's gotten older he's been better able to regulate his body and what he's doing with it.  Yes, he still flaps but he seems to have grown out of most of it.  A little flapping never killed anyone, right?




My flapper.  I love him for it.



The tumor has been removed...

So I'm going to deviate from my normal ranting about Red Robe and my morning misery of getting the kids out the door to tell you this: my sister had a brain tumor removed this morning.  She had a lesion on her pituitary and they went in via her nose (disgusting, right?) and got rid of it.  All is good--she's in recovery now.  I suspect she'll have one whopper of a headache when she wakes up though.

I tell you that to tell you this:  my son did remarkably well with having his Aunt gone---she went to the East Coast to have surgery--I am truly amazed at how well he's processed the whole thing.  We told him she would be gone and why and he spent the whole day making CD's and DVD's for her "so she could have something to do during surgery."  Don't get me wrong, I suspect he doesn't understand the full magnitude of it and he was definitely upset when we told him, but he accepted it without too much worry and angst.  One of the benefits of literal interpretation, I guess.

That, and I'm amazed at how much my little humans are dialed into my emotional state.  I've been a little wound up and they, in turn, have been arguing, fighting and generally misbehaving.  Now that I'm a little more relieved, we'll see how it translates...

None for you.

After the Holiday weekend my husband's reached his limit with Red Robe.  He looked at me and said, "Is she always like this?"  Yup, yup she is.

This all started last night when we were getting ready for dinner.  She sits down in the family room, where we can see her and starts reading a book.  Now the kids are going ape, killing each other right in front of her and she's sitting there reading a John Grishom.  When it's finally time for dinner she plops herself down at the table and starts eating.  Doesn't bother to help the kids, get the baby in the high chair, nothing.  Just serves herself and shovels.  After dinner, she gets up, goes back to the sofa and picks up where she left off.  No help with the cleaning.  Nada.  Well, we have a rule in this house and it's if you don't help clean up after dinner you don't get dessert.  So, we get things cleaned up and I'm making some ice cream for the kids.  She walks in and starts to get a dish.  Alex looks at her and deadpan says, " No grandma, you don't get any, you did not help with cleanup."  He takes the dish away from her and chucks it in the sink.  And that folks, was our dinner.

Happy New Year.




This is what the older two have been doing since 8:00 AM.



Get out of town.

This happened yesterday and since I'm still sneaking around the house trying to do this without Red Robe noticing its a bit challenging.  Good news is, she leaves for a week on Monday!  Remember the f-up with flights on Christmas?  She's re-booked and is visiting my brother for a week.  I can't wait to see how well he does with her.  Don't get me wrong, I love the fact that she helps with the kids.  I just don't feel the "help" is offsetting all the other issues...

So my little Aspie came into our bedroom at 5:30AM yesterday and here was our conversation:
Alex:  Mom! Mom!  Guess what?
Me:    What? (Secretly thinking: this had better be good)
Alex:  My tooth fell out! (super-excited)
Me:    Get out of town, really??
Alex:  Mom, we're in town.  My tooth fell out.  Why did you say that?

So there we were at 5:30 in the morning working on analogies and how what people say might mean something else or may have a different meaning entirely. 


Now, I was up most of the night last night with Gracie, who is very unsuccessfully trying to break in her top tooth, and do you think in all that time I could have remembered to put four quarters under Alex's pillow?  Yes, the Tooth Fairy is a tight wad in our house.  And nope, not a frigging chance.  I totally forgot.  I didn't remember until he came into our room at 5:30 AM (again) and we had this little conversation:

Alex:  Mooom?? (all worried, bottom lip quivering)
Me:    Yeah baby? (seriously, again?)
Alex:  There seems to be a bit of a problem...the Tooth Fairy forgot about my tooth...      
Me:    I said nothing.  Except the phrase: shit, shit, shit was rolling through my mind.
Hubby: Alex, I think the Tooth Fairy simply forgot and he will come tonight.
Alex:   Really? OK.  Can I play computer???

Now, two things:
First--if this were my daughter she would have totally flipped out, saw stars, sobbed like she just lost a tiara.  It would have been unforgiven, unconscionable.  But because Alex is so literal he took what we said for fact and moved on.  Moved on.  This is one of the blessings of our Aspie--he's so rooted in fact, he took what we said at face value and went with it.  There are downsides to this, trust me, but right now we took advantage of it.  In the light of day what we did now seems wrong...

Second--ever since we saw one of the Tim Allen Santa Clause movies, where the Tooth Fairy is a man, he has changed sexes in our house and she has become a he.   I can already see a discussion on gender identity in my future.